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Saw the new Neuro today input welcome

Sorry I haven't read the boards today I will be back going to ponder, cry or joy for a bit. here is what happened sorry so long please opinions, you all help me feel better. thanks in advance Mary

Hi
Had my new neuro appt today. I already knew he was a jerk, bad bedside manner but good, as my old one passed away, they where friends so that may have helped.

I filled out the forms, never got around to my history, bad me, took my MRI and CAT scans from 2003 and told him BRIEFLY my biggest complaints, cement legs, vision, using wrong words, pain and FATIGUE.

He did the usual, reflexes, had me walk, told him of course of all days today I feel better just knee and foot pain from carrying cement for so long. I also said I want my life back whatever it is I am okay just get me out of pain and fix the fatigue I am good to go.

I said look we are out of food the thought of going and walking through a store just the thought is painful. Then he said oh that sounds like depression…… I said OH no I was tested for depression I want to work in my yard, etc… I have anxiety not depression I had that ruled out.

He said well depression medicines help you sleep and help with pain too so don’t worry if we end up putting you on those also to help with symptoms they treat lots of things. He was nice and he is right stress does cause more pain. (stress of not knowing why I have been sick for 20 years)

So I said after he said we are going to do many tests (my right side reflexes did not impress him) and I said fine. Asked him can you give me a guess on what it is (playing dumb) He said yes I can guess but test will be more accurate. And I don’t want to worry you more your blood pressure is high. It was 118/90 I don’t get white coat high blood pressure normal is 110/65--- unless something is up with me then it goes crazy so I take bp meds daily for a prophylactic.
I said okay thanks.

Went out to get set up, having new MRI w/contrast it says ‘cranial nerve 3-6 protocol (hearing, vision, facial pain cranial nerve palsy) as you can check several boxes. (choices they have on what to order)

What is that one compared to other MRI anyone???

Then a nerve conduction test both arms and legs (what does that mean never had this one) again anyone??

The Oh so fun EEG—hate that test no coffee no sleep.. sure headache after but he is doing good.
Then the results of all tests the 15th.

SOOOOOOOO then as I am making these appointments Mr. No bedside manner comes up to me pats my shoulder and says “sorry I won’t guess for you but I think you and I both know what it is” I smiled and said “yes we do and it’s okay I am good with it just help me be a mom again”

So without telling me he told me, I don’t think he is a lesion counter, not sure what he saw today as I am really better then the last 3 -4 months but guess he saw something.

Moral of the story first visit let the Doctor be King, next visit demand help.
Or move on??

Any input would be great, think I am happy sort of validated. Also in shock, little tears, but it’s the anniversary of my grandma’s death and she was my world and her’s mine so anyhow sorry. A gooey mess but okay.

You all are awesome!
Mary
18 Responses
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198419 tn?1360242356
Cranial Nerve Info bump. . . good stuff!
Helpful - 0
413836 tn?1206465112
Hi Mary:

I can see you have gotten alot of great info and responses
here.
I am so glad this is going to get sorted for you.  Hang in there!
Oh your so welcome, on the bladder thing.

It took awhile before I posted on it, I just get embarressed easy lol.
Im glad I did now.
All this time I just kept thinking it was due to age and having 2 kids.
Im sure some of that contributes, but not the majority. Its always
good to have it checked instead of Dx ing ourselves like I did. lol

All My Best Gollie
Helpful - 0
147426 tn?1317265632
Bell's Palsy (damage or inflammation of the Facial nerve (CN VII) is very common.  It does occur in MS, but more frequently from other causes.  Common causes are a viral infection, an ear infection, trauma, MS, surgery or dental procedures.

In my reading, Bell's Palsy is usually just on one side, but it can occur on both sides at the same time.  When this occurs it should prompt the doctor to look farther, especially for Lyme Disease or MS, especially in the presence of other neurologic complaints.

Quix
Helpful - 0
Avatar universal
Gollie may have helped tons today, she asked me about my bladder before I went and if I had trouble to mark it down. Well she is right sometimes we don't want to talk about that stuff.

I did mark it on the sheet and when he asked me I told him I had a thing (sling) put in when I did my hyst and I was better then before it. 2 years before it  I was up 5-7 times a night and no one cared I gave birth 3 times!  (they ignored the sign) But now I still run to often durning the day and yes caffiene can be a problem but I had thought it was an infection it started with this flare up. any who it made the doc very interested.

BIG ol thank you to GOLLIE!

Mary
Helpful - 0
Avatar universal
Where the heck where you when I had biology last quarter!!! WOW. that was great
Yes more I hope you post this in your main pages made tons of sense.

I think he saw the eyes, the smell I have no facial trouble (that I see).

CVII and tentinits? maybe I have that term confused wow great information.

more conformation also as what I thought he saw, but I thought he saw something wrong with my legs right side, no test for that. Hum maybe more to come or it's balance he saw and I am just used to how I walk?
I have read your posts on MRI and slicing so do you think they will see something I have tons of symtoms odds anyone I feel like I am out of limbo but ?????
Limbo stinks.

This is a great place serious where where you when I did so lousy in biology!!!!

HUGS to you all, an happy, emotional mess,
Mary
Helpful - 0
427279 tn?1210919821
yes i would to...i find it intresting...and i do have a question...if you have bells palsy does that go in with ms?...not me my brother has it...thanks a bunch take care ...deb
Helpful - 0
Avatar universal
I would like you to cover the rest of the cranial nerves when you have time.
  Thanks,
  Elaine
Helpful - 0
147426 tn?1317265632
Oh, boy, you really did a pretty nice treatment form a doc with no bedside manner.  He really reached you, didn't he?  People have given you good advice.  you will likely go through a whirlwind of emotions, but as ess has said, you will likely deal with this news like you have dealt with other big issues in your life.

I will take on interpreting the MRI request, which I found fascinating.  I have a theory on the meaning of the use of the term "Cranial Nerve Protocol."  This is my major thought.   He uses the term "Cranial Nerve Protocol" as a euphemism for "Rule Out MS."  Very few disorders affect multiple cranial nerves.  MS is by far and away the most common.  So when people see this, it doesn't give away that the Dr. supsects MS.  And the patient doesn't freak out on the way to the MRI.  The phrase probably tells the radiologist to use an MS Protocol for the MRI imaging.  This means thin cuts, no skipping of areas, and specifies that a given set of techniques be used to maximize the pick up of any lesions.  It also tells the radiologist which cranial nerves had abnormalities on exam.

A little bit on the Cranial Nerves:  These are a  twelve sets of nerves that sprout directly off the brain and brainstem.  Thus, even though they go out into the body, (like peripheral nerves do) their origins are in the white matter of the Central Nervous System.  So these 12 nerves (actually 24 nerves, one on each side) are considered white matter.   A lot of the common MS sites of demyelination involve the Cranial nerves.  If you have read many of my posts, you'll remember that I am always mentioning that this that or the other symptom are from lesions in the Cranial nerves.

He must have found a problem or you must have symptoms in Cranial nerves III, IV, V, VI (they are always designated by roman numerals).  As a example I'll discuss the first seven.

CN I - is the Olffactory Nerve - This nerve comes directly off the brain and handles the entire job of the sense of smell.  Changes in sense of smell can occur in MS, from loss to alterations, to smelling weird things that aren't there.

CN II - the Optic Nerve -  Yep, handles the whole process of sight and vision.  Lesions on this nerve from MS cause the condition Optic Neuritis.

CN III - the Oculomotor (eye movement) Nerve - This nerve handles 4 of the six muscles that allow the eyeball to move around, instead of staring straight ahead.  It also raises  one of the major muscles of the upper eyelid.  It also has the function of working to control the pupil constriction to light and to close/far vision.

CN IV - the Trochlear Nerve - This nerve handles the muscle that allows the opposite eye to rotate using the supeior oblique muscle.  This allows fine tuning of the eye movements other than just up/down and side-to-side.  It is the only cranial nerve that crosses over to direct something on the OPPOSITE side of the face.

CN V - the Trigeminal Nerve - This is the major nerve for sensation to the face.  It is responsible for the sensations of numbness, tingling and PAIN (as in Trigeminal Neuralgia) seen in MS.  This nerve has three main branches.  It's name means "three roots)  V1 brings sensation from the upper part of the face and eyelid, the temple and the forehead.  V2 is the mid-part of the face, cheek, nose.  Also the upper teeth, gums,upper lip  and inner cheek.  V3 handles the sensation from the lower face, lower teeth and gums, and lower lip.  It extends down to and slightly beyond the jawline.
The Trigeminal Nerve also handles the sensation from the sinuses, from the outside surface of the eardrum, and from the meninges.  It also directs the muscles of chewing.

CN VI - the Abducens Nerve - This nerve handles the eye muscle attached to the outside eyebal and allow the eye to turn laterally to the side.

CN VII - The Facial Nerve - This nerve handles most of the muscles of the face and lips and around the eye.  It handles part of the control of the glands of the face.  It carries sensation from the ear, the middle ear and the interior of the eardrum.  It handles taste for the anterior 2/3's of the tongue on the same side.  When this nerve goes wonky you get a Bell's Palsy - Drooping of the side of the face, droopy eye, etc.

CN VIII - The Auditory Nerve - Responsible for Hearing and Balance (peripheral balance)  Damage to this nerve can cause hearing loss and vertigo, and tinnitus.

So, Mary, you can see that he was concerned with your eye movements and possibly with sensation (numbness or pain?) in your face.

If people found this interesting I'll be glad to go over the other cranial nerves and the lesions that go with them.  Or it may have just been too much info, lol.

Quix, Founder and member extraordinaire, On-AND-ON ANON
Helpful - 0
Avatar universal
You have me pegged, concentrate hum, yes up and down. I really want a firm dx but you know he would have given it to me if the test where complete I don't think I have to wait much longer as far as the way I am feeling he gave me one today MS.

He read the chart did his thing and saw it he never mentioned Fibro just I have been told that before like most.
oh the whole what happened to day is so hard to type. to explain. Basically he said his gut/knowledge says MS, now lets see what the tests say.

For those of you that know me I have been through all the tests for everything, for years and years even treated for Lupus for years then RA for years and guess what that is so not my problem!!!!

I was surprised as he was nice, and Iove that I did get checked for depression with my first round of tests years ago so I could say that to them today and get that ruled out so they have to go further with the right tests. It was so worth making the appt with a counsler trained in such things and for them to say NO you go back to your doctor and tell them its not in your head it is medical.   you can only take so much of people saying its in your head and I know it's not in mine.

I can't wrap my brain around what is next, then I get shooting nerve pain in my right leg, not bad but enough to know it's there been there lately and wonder what is next. If I start thinking about what could happen well then I will be a waterfall.

My mom is freaked only she accepted this last year it was me draggin my feet (no pun intended)
not sure I should tell anyone until the tests come back.
I can still use some help what are they looking for now with the nerve thing what is that for what do you think he saw, I know I did not feel as much on my right side but I "think" my walking looks okay to others, oh I did trip over my feet not durning a test but that is not normal for me.

so what's next? I feel like I am emotionally drained, I really wanted confirmation and this is 99 percent one now I feel so happy, sad, emotional crying pity party scared.........

So glad this forum is here, I haven't been up to reading other posts today and feel terrible others are worse off then me today and I can't help lift them up but sure the rest of you are.
thanks
Mary
Helpful - 0
429700 tn?1308007823
Zilla, you're so funny!  hehe

Mary, maybe you'll get some answers, and like you said, move on and finally be a mom again.  

I was just diagnosed about a month ago and know that you're probably going through many emotions right now (even though you don't have a firm diagnosis)--maybe sad one minute, a little scared the next, then elated (maybe, because you know what the problem is), dependent and vulnerable--needing to share with someone your thoughts.  

This is a good place to share your thoughts.  I know there's a limit to what I want to share with my family members.  

I have found that competent doctors are what you need.  My doctor has been known to speak his mind on certain issues, but he's the best doctor I've ever had and I couldn't trust anyone else.  Who knows . . . you may be surprised that you grow to really like this doctor, once you get to know him.  

I know the feeling of shock.  Even though I had a pretty good idea of what was wrong, I was in shock for a period of time.  There's a lot to take in and think about.  You'll probably find that it's hard to concentrate on anything constructive for a while, but do stay positive!  

(((((((HUGS))))))))
Deb  
Helpful - 0
220917 tn?1309784481
Well, that's a good thing!!

I can't imagine a neuro saying, Well, I'm sorry.  I guess we both know it's FIBRO.  Fibromyalgia is a painful, frustrating condition, but I don't think he'd be afraid to say it.

I think you handled him beautifully!

Zilla of fair hair*
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Avatar universal
Momzilla- its' called fog not blonde as I have those moments always yes I guess I wrote this in a fog!

Yes he thinks MS, the questionaire I filled out with all the stuff on there symtoms etc... plus the old Neuro writing possible MS he said he wasn't going to say it outloud and scare me then he came up to me later and said you know mary don't you and I said ya, he said it will be okay or like that.

no he ordered bunch of tests but we are only left with MS or Fibro to rule out I think he ruled out fibro as the main one today. not sure what he saw in my chart or walking or reflexs. not sure what the tests he ordered mean> some are new too me.
Mary
Helpful - 0
429700 tn?1308007823
Is your neuro is thinking that you have MS?  When do you see him next?  I hope he's not leaving you hanging . . .

Deb
Helpful - 0
220917 tn?1309784481
OMG!!!

I left you hanging when I left for home after work!  I'm so very sorry!!

What I mean to say is, I'm just not sure what exactly he meant and you meant by this sort of sideways talking about"we know what it means."  Unless he saw telltale lesions on your MRI or something.

Do you know what I mean?  I didn't mean I'm afraid.  I meant "I'm afraid I don't understand."  That's all.  I'm blonde, if that helps you know you have to spell it out for me better!

Zilla*
Helpful - 0
Avatar universal
Hi,
it's a few hours later and now I am a wreak, I feel validated still like he saw the signs and symtomns of MS but now I hit freaked out and really want inforamtion and the tests he ordered why what etc... I have done the EEG before and an MRI without contrast, what do you think he saw?

Just looking for calm or gosh i am blown away and get teary, happy, sad all in a few hours HELP!
thanks again
Mary
Helpful - 0
Avatar universal
Oh I think u mean did he think I was depressed or what? No he thinks MS too.
guess the way I wrote it was confusing.
mary
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Avatar universal
Hi,
I had two scans 3 days apart first for vision then lost my speech records showed the reason for tests slurred speech and blurred vision.
reports said "nothing remarkable" on both. But at the ER they where looking for a TIA (minor stroke) as BP was so high. The doctors both times said they saw spots on the MRI but none where current (the reason why I was in the ER) and that people have spots, lesions on there brain and that is normal, unless you get more???

my neuro then said well maybe MS but we have to wait and after months of tests lots and lots just said 'complicated migraines for now" but a question mark on the chart for MS. I was so sick of doctors and upset I just stopped going. I never get pain with my "so called migraines" I just stopped being able to speak right or see right!!! Always had pain.

Zilla why are you afraid, now I am confused.:-) what did I say let me help you I get confused will all the folks here also trying to figure out who is who with the stories I do try!

tell me what your thinking please ..

oh today he did not look at the MRI or CAT he said take them with me for the new tests?????
Mary
Helpful - 0
220917 tn?1309784481
I really am lost, I'm afraid.  It's so hard to keep up with everyone.  When you brought your old MRIs and CT scan -- what did they show?

Sorry to have to ask,

Zilla*
Helpful - 0
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